Definition of ‘health care’ at centre of dispute as health authorities defy B.C. Alzheimer’s patient's living will

VANCOUVER — Every day, in hospitals and care homes across Canada, workers unplug breathing machines, withdraw feeding tubes and eschew surgery, all to respect a patient’s written desire that they be allowed to die before the debilitating effects of their disease take hold.

But in the outskirts of Vancouver, the staunch refusal of one health authority to follow an elderly woman’s wishes to refuse spoon feeding could shape up to be a major test of what Canadians can and cannot refuse in order to die.

“If somebody decides they’re going to stop eating, and they’re of sound mind, they can make that decision even though it will inevitably result in their death,” said Brian Samuels, one of two Vancouver lawyers taking up the case of 82-year-old Margot Bentley, a late-stage Alzheimer’s patient being kept alive via spoon feeding in defiance of her 1991 living will.

Signed long before Ms. Bentley’s Alzheimer’s diagnosis, the one-page document stipulates that if she should find herself “with no reasonable expectation of … recovery from extreme physical or mental disability,” doctors are instructed not to provide her with “nourishment and liquids.”

“Her wishes are very, very clear; anybody who sees them in writing can have no doubt about what she wanted,” said Mr. Samuels.

But Fraser Health, the area’s governing health authority, asserts that the document is asking the workers of Maplewood House, her Abbotsford, B.C. care home, to do something illegal.

“Health care workers are obligated to provide the necessities of life for patients … that includes providing food and fluids,” wrote Keith McBain, Fraser Health’s Executive Director for Residential Care and Assisted Living, in a statement published last week.

If Maplewood House staff put down the feeding spoon, Fraser Health has warned in letters to Ms. Bentley’s daughter, Katherine Hammond, they could be found guilty of ‘‘neglect’’ under B.C.’s Adult Guardianship Act and even face prison time under the Criminal Code.

“They are in a position where if they fail to provide necessities, they might open themselves up to prosecution,” acknowledged Lawrence Greenspon, an Ottawa lawyer with experience on end-of-life issues, adding the public profile of the case has only heightened the risk.

At the core of the case is each side’s definition of the words “health care.”

Like any Canadian, it is entirely Ms. Bentley’s right to eschew surgery, drugs and even a feeding tube, even if it has lethal consequences. This right was famously tested in a 1979 case in Ontario in which a doctor was reprimanded for giving an unauthorized blood transfusion to an unconscious Jehovah’s Witness, even though the transfusion undoubtedly saved the patient’s life.

But while Fraser Health asserts that patients can turn down “artificial nutrition” in the form of IVs and feeding tubes, “food by mouth” is something different entirely.

“We’re not force-feeding people; as long as somebody is opening their mouth and accepting food, we’re feeding them,” said Cari Borenko Hoffmann, Fraser Health’s project coordinator for advance care planning.

Under B.C. health law, health care is defined as anything that is “therapeutic, preventative, palliative, diagnostic, cosmetic, or other purpose related to health.”

Fraser Health has asserted all throughout Ms. Bentley’s case that this definition leaves out spoon-feeding, but Robert Gordon, one of the definition’s authors, claims the health authority is merely “cherry-picking.”

“The intention always was that it would encompass anything that was being done for a purpose related to health,” said Mr. Gordon, a professor of criminology at Simon Fraser University and one of the drafters of B.C.’s Health Care (Consent) and Care Facility (Admission) Act, in which the definition is contained.

In the words of Vancouver lawyer Hugh McLellan, “if you don’t feed the person, they can’t feed themselves, therefore you’re providing something for their health.”

‘We’re not force-feeding people; as long as somebody is opening their mouth and accepting food, we’re feeding them’

Ms. Bentley indeed appears to be willingly swallowing the food, but her family and her doctor assert that the action is purely the reflexes of a woman who has lost the cognitive ability to refuse.

“Merely opening your mouth when it gets tapped on by a spoon doesn’t constitute valid consent,” said Jocelyn Downie, a professor of health law at Dalhousie University.

“Think about it: you could be putting poison on the spoon, tap her on the mouth and she takes it. Do you think that’s valid consent?”

Joan Rush, a retired B.C. lawyer specializing in health care law, notes that whether the food is administered by spoon or tube, in both cases, Ms. Bentley, who is almost completely immobile, would quickly die without a nurse’s help.

“If the only way you can get food is by someone putting it in your body, isn’t that medical treatment?” she said.

Either way, according to the lawyers acting for Ms. Bentley’s family, it is unusual that Fraser Health has decided to take a stand on the issue, even to the point of threatening to assume guardianship of Ms. Bentley on the basis that her daughter, Katherine Hammond, appeared “unwilling to support the continued provision of nutritional care,” according to a letter sent by the authority.

“We are investigating what legal role they have, if any, in this matter,” said Kieran Bridge, the lawyer acting with Mr. Samuels.

Two other Vancouver-area care homes agreed to accept Ms. Bentley and honour her wishes not to be fed, but the transfer was ultimately blocked by Fraser Health, said Ms. Hammond.

Ms. Bentley’s doctor, Andrew Edelson, said his colleagues in the medical community were “shocked” that Maplewood did not simply carry out the living will without feeling the need to go over the fine print.

‘Merely opening your mouth when it gets tapped on by a spoon doesn’t constitute valid consent. Think about it: you could be putting poison on the spoon’

Historically, Fraser Health has been a Western Canadian pioneer in counseling terminally-ill patients and the elderly on how they wished to die. In 2004, long before B.C. had inaugurated official legislation governing living-will-style documents, Fraser Health launched the “Let’s Talk” initiative urging patients to map out their final hours in advance, so it did not need to be hashed out by grieving relatives.

And in 2007, three Fraser Health officials, along with Joan Rush, co-authored a paper asserting that “health care providers are legally, as well as ethically, required to learn and follow the wishes of our patients and other public constituents.”

Nevertheless, last month one of the report’s authors, Dr. Doris Barwich, Fraser Health’s director of End of Life care, told Postmedia that she drew the line at halting spoon-feeding.

“I don’t feel that it is something a patient should be asking a health care professional to do,” she said, adding that “it basically violates the oath I took as a health care professional.“

According to Mr. Greenspon, Maplewood and Fraser Health are going against the grain: “We’ve sanctioned passive euthanasia; the medical community is carrying it out on a daily basis,” he said.

As long as a patient leaves behind clear instructions penned when they were of sound mind, Mr. Greenspon said most doctors will readily withhold basic necessities — and ramp up painkillers — in order to “respect the person’s wishes to die with dignity.”

“What’s being done as an ‘end-around’ on a daily basis, [Maplewood] is refusing to do here,” he said.

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